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abarnes

Treatment of Interstitial Lung Disease

19 posts in this topic

My wife has had diffuse scleroderma for about 15 months, with an associated Interstitial Lung Disease (UIP). She also has the usual digestive tract problems associated with scleroderma, but these seem to be being managed quite well.

 

The chest consultant is recommending a course of treatment involving low-dose steroid (CYC then AZA) and immunosuppressant (Prednisolone).

 

Can anyone share their experience of this treatment combination?

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Hi I have lung problems and take steriods I did try AZA but had a bad reacation to it not sure what the cyc is can you tell me the whole name is your wife should talk to her specalist about them and how they might help with her lung issues hugs Lynn

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Hello Abarnes

Welcome to the forum although I am sorry you have joined us because your wife has scleroderma. Having read your post I have made a few assumptions as to what the abbreviations refer to if I have assumed wrong my apologies and please let me know.

I assume that by CYC you are referring to cyclophosphamide (cytoxan) and the link will take you to the information on this site about that drug which is used to treat pulmonary fibrosis. I also assume that AZA refers to azathioprine and again the link takes you to information on this site regarding that drug. Needless to say we also have information regarding the steroid prednisilone being used in conjunction with cytoxan and azathioprin.

I do not have any personal experience of lung fibrosis so can't assist you there but I am sure someone else will chime in.

As well as a chest consultant is your wife seeing a rheumatologist experienced with scleroderma because it can be a complex disease as I am sure you already know. I am glad your wife's gastro issues are well controlled, as a newbie to the gastro club myself I am now painfully aware of how unpleasant the symptoms can be.

I hope this post is of help to you and your wife, please post any questions as they arise.

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hello Abarnes

 

Like your wife I have Interstitial Lung Disease (mine is actually a fibrosing organising non-specific interstitial pneumonia to give it it's correct title!! ;) ) which my consultant believes has been caused by Scleroderma/Polymyositis & I am on more or less the same treatment as your wife.

 

I take 10mgs of Prednisolone daily & also a supplement recommended by my consultant (N-Acetyl Cysteine) apparently to help with the scarring on my lungs. I am having 6 intravenous treatments of Cyclophosphamide at 4 weekly intervals until Dec. & then will be going on Azathioprine.

 

I was not keen on taking steroids or having the CYC but I have to say that the steriods are a miracle drug.........I feel soooo much better; my joints were excruciating & my fingers were so swollen but once the steriods kicked in. my joints improved, the swelling has gone down & I am able to carry on with my life as per normal. I haven't really noticed any side effects with the steroids despite hearing all manner of dire warnings with them; perhaps a slight increase in my appetite which I take absolutely no notice of (I don't do weight gain & haven't put on one single pound with them!!!) & they do increase your mood but I am always very upbeat anyway & again I don't do moody or depression!!

 

As far as the CYC goes the main problem I have had is with constipation after the first infusion; (I think it was the anti sickness drug) however I took a stool softener & it seems to have sorted that out this time (I've had 2 treatments so far.)

 

I'm due to see a Rheumatoid Consultant at The Royal Free Hospital very soon but all the results of my blood tests appear to suggest Scleroderma/Polymyositis (they're still waiting on the Lupus Anti coagulation results.)

 

Hopefully, Abarnes, your wife will get as good a result from the drug combination as I have..........I don't like bombarding my body with all these powerful drugs but I tell myself that it is either that or I die which I find concentrates the mind wonderfully!!! ;) :lol:

 

I do hope this post will give your wife some encouragement & she will feel a little more confident with the treatment.

 

Take care x


Jo Frowde

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I'm going to be the gentle alarm bell ringing in the background about the use of steroids by scleroderma patients. Please check out the section on Steroids and discuss the risk/benefit with your prescribing doctor.

 

It's often a tough call to make. Good luck to you all.

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

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(Retired) ISN Blog Manager

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International Scleroderma Network

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Hi Jeannie

 

Interestingly one of the consultants dealing with me mentioned that she had the same reservations about streriods with Scleroderma which is why she didn't use a high dose of steroids & prefered to go the low dose/ CYC route, so they are obviously aware of it.

 

I have been extremely fortunate in that I have been treated at The Royal Brompton Hospital which is one of the best of it's kind so I feel quite confident with the treatment they are giving me. :) Actually, despite the bad press the NHS has received lately I have to say that I have had the most fantastic treatment from it; I could not have had better had I paid privately. Admittedly my husband & I have paid in to it all our lives but it's nice to know that when I really needed it, it came up trumps for me!!! ;)

 

Thanks for your concern, though. x :)


Jo Frowde

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ISN Sclero Forums Manager

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Hi Joelf,

 

My rheumatologist has the same sort of reservations. I'd been on low-dose steroids for quite a while before I saw him. He would have been willing for me to carry on at the lowest dose that was effective against my pain, but preferred I wean off them if possible. A couple of other medications enabled me to do that.

 

A couple of years ago I had a wretched case of shingles. Because they were getting close to my eyes, my general practitioner prescribed an anti-viral and a short-course, high-dose steroid. In that case, the risk/benefit came down solidly on the benefit side. :)

 

When I was living on the right side of the pond, I thought I had top-notch care from my NHS doctor and dentist. It's taken a while, but I've ended up at a center of excellence with a wonderful team. I am quite sure I would not be doing as well as I am without their expertise and team approach. Life is so much nicer when you don't have to worry about how well you are being 'doctored', isn't it?

 

Have a great weekend!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Jeolf

 

Welcome to the forum and I am glad that the treatment for your lung issues is so far so good!

 

When waiting for a blood test at my local hospital a woman was complaining about how long she had to wait and I wanted to remind her she didn't have to pay for her treatment as they do in other countries and she would be sure to get it however long she had to wait. We are keen to knock the NHS so it's nice to see the opposite, it has its issues but it's there for all to benefit from regardless of their financial situation. I too have had excellent care for my scleroderma courtesy of the NHS and one of the consultants I have seen is one of the country's leading sclero experts. You can't complain about that!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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An update on my wife's condition.

 

Late last year we agreed to a course of 6 IV Cyclophosphamide treatments and Prednisolone (steroids) as well. All was going well until IV number 5, to which there was a bad reaction and which resulted in Ann spending 6 days in hospital being re-hydrated and being got back onto solids.

 

She kept taking the steroids but no immunosuppressants while weight came back etc, then started on Azathioprine about 3 months ago.

 

At present things are good. The steroid dose is being reduced (now down to 10mg/day) energy is coming back, weight being maintained, lung function is stable and no further gut complications. The skin condition has improved markedly as well.

 

So, many thanks to our general practitioner, and the Churchill, Nuffield and Horton Hospitals.

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Hi,

 

Just wanted to say hi and welcome to the forums. The Churchill and Nuffield are both local hospitals to me and the Horton (I'm thinking may be Swindon, but I might be wrong!), so wondering if you and your wife are from the Oxfordshire area. Would be interested to know which doctors you are under and how you rate your treatment so far. I'm currently seen at the JR for all gastro problems and the rheumatologist I am seeing although based at the Nuffield holds a medical clinic at the JR and for the lungs I am at the Churchill.

 

Had an appointment yesterday with new gastro doctor and he wants to have a meeting with all the other departments and talk about stem cell treatment. This all came as a bit of a shock because as to date I have not had any immunosuppressants or steroids, so I will have to await the outcome.

 

I'm glad your wife seems to be showing signs of improvement, it is so good to hear positive news, I think it is uplifting for all of us to hear that someone is slowly on the mend.

 

Best wishes to you both,

 

Sandy B

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Hi Andrew,

I'm so pleased to hear that your wife's treatment has helped her and that she has stabilised and is doing well. :happy-day:

 

Sorry to hear she had a bad reaction to one of the infusions; coincidentally I was also worse on the fifth one as well (although I was only throwing up and didn't have to be re-hydrated ;) )

 

Hopefully now she'll continue to improve!! :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Abarnes

 

I am so glad your wife is doing better and that the cyclophosphamide treatment is over. I hope the Azathiaprin continues to work and any improvement in skin condition is worth celebrating :flowers:!

 

Take care and keep us updated.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Sandy

 

Ann is under the care of:

 

Rheumatology - Dr Rashid Luqmani at the Nuffield

Lung - Initially Dr Peter Benson (now retired) then Dr Rachel Hoyles at the Churchill (she is due back from maternity leave shortly)

Gastroenterology - Dr Tony Ellis at the Horton (which is in Banbury)

 

We have the highest regard for all of them and consider ourselves fortunate to live in the 'catchment' area. (I know its not necessarily a geographic thing, but general practitioner referrals tend to be so). They also communicate with each other and our general practitioner about the case.

 

Thanks to all who sent their good wishes - much appreciated.

 

Andrew

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Update on my wife's condition.

 

Since my last post (about a year ago) things have continued to improve. Her skin is back to normal, lung function has improved, digestion is stable and weight maintained. She needs to be very careful about diet and sleep posture is also very important, but things are good. Steroid dose is gradually being reduced, currently 8mg daily. Azathioprine also being maintained.

 

So, thanks to all the medics, and I hope that her experience will encourage those of you that are recently diagnosed and feeling a bit low.

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Hello Abarnes

 

Fantastic! That's great for both you and your wife and long may it continue! :flowers: are called for and so is :emoticons-line-dance: !!!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Andrew,

 

Thanks so much for updating us on your wife's condition and I'm really pleased that she seems to have stablised. :emoticons-yes:

 

Her excellent treatment has mirrored mine and I'm so glad to hear that she's doing well on the Azathioprine and Prednisolone (as am I! ;) ) I'm sure her story will give lots of encouragement to our members. :emoticons-clap:

 

Best wishes to you and your wife and I'm doing the Sclero Happy Dance with Amanda for both your wife and myself!! :emoticons-line-dance:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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